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IACFS/ME Primer - 2014 Edition

The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

In a study reported online in Science on Sept. 22, 2011, and presented the following day at the IACFS/ME Conference in Ottawa, Canada by the senior investigator, Dr. Graham Simmons, the XMRV Scientific Research Working Group (SRWG) announced that in a 9-lab study, XMRV/MLV was not reproducibly detected in blood samples.

Blood samples from 15 subjects previously reported to be XMRV/MLV-positive and 15 healthy blood donors previously determined to be XMRV/MLV-negative were distributed among 9 labs in a blinded fashion. These labs performed tests to detect viral nucleic acid, antibody, and viral replication.

Seven labs found no evidence of virus in any samples; two labs did detect virus in some samples, but the results were not replicated between the two labs, and similar viral activity was found in both positive samples and controls.

The authors concluded that present assays (laboratory tests) could not reliably detect XMRV/MLV in blood samples, and therefore routine screening of the blood supply was not warranted.

However, during the question period following his presentation at the Conference, Dr. Simmons confirmed the current recommendation that patients with a diagnosis of CFS or ME not give blood.

Published online 22 September 2011 [DOI:10.1126/science.1213841].

Notice about names

The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.